As mentioned in last month’s post, the indoor base for adaptive seat arrived, so she’s been spending more time in it and is adjusting quite well as you can see below (probably because she now associates it with eating instead of just being strapped in for a walk previously).

Maddie’s sitting has been improving these past few weeks.  Although not all the time (I would say occasional instead of rare J), she’s starting to sit by herself for longer periods of time (more than a couple seconds, which is the usual).  The way she likes to get out of sitting is lifting her hand up and then falling backwards.  The second picture below is seconds before she leans backwards.

She’s also been able to spend more time in her “hard” stander.  The “easy” stander has straps all the way from her shoulders down to her feet so she doesn’t have to work as hard to stay upright.  However, the ‘hard” stander only has a belly strap, knee supports and feet straps so she has to do more work herself.   We’re currently doing a combination of “easy” and ‘hard” standers everyday right now, but our goal is to eventually switch to the ‘hard’ one full time!

We had an ophthalmology appointment and unlike previous visits, the doctor did diagnose her with optic atrophy.  I was a bit in shock the day of and still have questions for the doctor (whom I’ve been having a hard time getting in touch with), but in general, there’s nothing that the medical world can do right now for optic atrophy, so it’s just how to work around it.  In spite of the diagnosis, Maddie’s vision has continued to progress.

Below is her on her non-preferred side(!!) with her big, beautiful eyes looking at something…  As a side note, she’s getting stronger and more spontaneously turning herself over to the left (using her right side, which is weaker).  She used to turn to her stomach and turn herself back so she just went back and forth, but now that she’s able to her other side, she can actually move from one place isn the room to the other.  As we used to say before her surgeries, rolling is her main form of transportation.  It’s so nice to see that again J

One of the things we’re working on right now with the vision therapist is to have Maddie work on her vision in positions other than laying down (since that’s easiest because she just has to focus on “seeing” and not holding her head up or pushing down on her legs).  However, because of how her episodes have evolved (see details later in this post), it’s not easy to work on vision while laying down anymore.  This would have been the natural progression anyways (to use vision in other positions), so it works out.  However, it is much hard for Maddie.  Below are a few pictures of us working in her stander, in her adaptive seat, etc.

Think of it similar to her brain… there’s been damage, but she’s young so we will give her and equip her with whatever we can to help stimulate those nerves.

Since the last post, her episodes have evolved (yet again) so that she now starts rapidly fluttering her eyes whenever we lay her down (except in the bathtub), which is usually a precursor to her twitching.  Most of the time, we’re able to stop them by alerting her to sound or by physically moving her to another position.

Dad recently put together a swing for Maddie in our enclosed patio.  Although we have a swing down below in the backyard, Abby does not react well to mosquitoes and we’re afraid of Maddie having similar reactions (ridiculous swelling…), this was Dad’s brilliant solution J  This is an extra convertible carseat that we have from Abby, which gives Maddie more back/head support compared to a normal bucket swing.  As you can see, she loves it!  (There have definitely been giggles and laughing out loud in the swing!)

To end, here’s my favorite recent picture of Maddie and Bill.  We went peach picking the other weekend and it was snack time for Maddie, so she got to enjoy her milk out in the sun on the grass!